As parents, we all dream of having healthy kids. But when you find out that your child has a disability, it’s as if that dream is shattered into a million tiny pieces.
Our second daughter was diagnosed with Stickler’s Syndrome when she was born nine years ago. Stickler’s Syndrome is a connective tissue disorder marked by a lack of collagen that is used to develop cartilage in our bodies. Its effects can include hearing loss, and doctors at first believed our daughter was completely deaf and wouldn’t be able to hear anything, thereby delaying her ability to learn language.
The initial shock of this news was overwhelming. Not only were we scared, but confused about how to best help her. Questions swirled our heads: How would we be able to communicate with her? Would hearing aids help? Did we need to learn American Sign Language (ASL)? If so, where do we learn ASL? Did being deaf mean that she would not be able to attend “normal” school? The laundry list of questions went on and on.
Hearing loss comes in varying degrees. There’s slight, mild, moderate, moderately severe, severe and profound. After some additional testing, the doctors told us that our daughter had moderately severe hearing loss, which meant that without hearing aids, speech is inaudible to her. And even with hearing aids, speech is difficult for her to understand.
Rearing a child with hearing impairment is not for the faint at heart. It causes you to reconsider every aspect of how you live your life and what your focus will be.
After discovering that our daughter would be able to benefit from hearing aids, we found out that most medical insurance policies don’t cover their cost, as they are considered more an “accessory” than a necessity. Entry level hearing aids cost anywhere from $1,500-$2,000 each. We purchased her first set when she was about a year old.
In order to facilitate communication with her, my wife decided to learn ASL by taking night classes at the local community college, in case our daughter went completely deaf.
“Rearing a child with hearing impairment is not for the faint at heart. It causes you to reconsider every aspect of how you live your life and what your focus will be.”
When she was ready to attend preschool, we discovered that the school district where we lived didn’t have a deaf and hard of hearing (DHH) program. The nearest one was 45 minutes away. Making the commute every day, especially in Los Angeles area traffic, was overwhelming. It took us about a year of commuting before deciding to uproot our family from our comfortable three-bedroom house to move into a tiny two-bedroom apartment so she could attend the DHH program.
We lived on the second floor of the apartment complex. As you can imagine, we were loud neighbors. We spoke loudly, listened to the television loudly, and she sang loudly. One day we had been particularly noisy, so my wife went to apologize to our downstairs neighbors only to find out that the couple, a husband and wife, was fine with all the noise we had been making because, as luck would have it, they were completely deaf and couldn’t hear a peep from us.
As our daughter began learning how to speak, it was challenging to understand the words she would say. We would have to correct and help her with pronunciation and enunciation of words, which was frustrating for all of us.
Additionally, we had to take her to various doctor’s appointments at least once, sometimes two or three times a month, to see various medical specialists outside of her regular pediatrician. There is a craniofacial team for her nose and jaw, an audiologist for her ears, a physical therapist and rheumatologist for her bones, an ophthalmologist for her eyes. Twice she’s had tubes placed in ears, and she’s undergone surgery on her retinas and to repair her cleft palate.
Every few months she gets tested by the audiologist to check on her hearing. Most of the time it’s routine to ensure that she still has the same level of hearing and that her hearing aids don’t need to be adjusted to make sounds louder. But recently, my wife and I noticed that her hearing seemed to be diminishing.
Even though she was wearing her hearing aids, we kept having to raise our voices and repeat ourselves so she could hear us. We would talk to her from another room expecting a response, only to be met with silence. When one of us would go looking for her, she would be playing with her dolls unaware that we had been yelling her name.
The sound to our television increased from level 30 to level 50, which is the maximum volume.
At night time, when I would tuck her in, I had to press my lips to her ears so she could hear the words, “I love you and goodnight.”
“My daughter looked at me and said, 'Why is it every time I come here, I always get bad news? Now, I’m never going to hear birds sing or anything like that.'”
We took her for a hearing test and the results revealed that she had lost half her hearing from the last time she had been tested six months prior. The doctor informed me that any additional hearing loss would make her eligible for a cochlear implant to replace the inner ear’s function ― but only in one ear.
As the doctor reviewed the test results, he commented that he had never seen someone lose so much hearing in so little time. He thought some of the cause was due to a fluid buildup in her ears, so he prescribed antibiotics.
With that, the doctor left the room.
My daughter looked at me and said, “Why is it every time I come here, I always get bad news? Now, I’m never going to hear birds sing or anything like that.” Tears started to well up in both of our eyes.
I crouched down. “If you were going to lose your hearing, what is the one thing you would want to hear?”
Without hesitation, she responded, “Opera. I want to hear the opera.”
Out of all the things in the world she could have mentioned, the last thing I expected her to say was that word.
It shouldn’t have surprised me, though. For the past few weeks, she had been trying to emulate, to our amusement, a Volvo commercial that featured a woman dressed in an orange dress singing opera.
“Okay, tomorrow, I’m going to buy us some tickets to the opera.”
I hugged and squeezed her little body.
Call it wishful thinking or being foolishly optimistic, but I had hoped that the day when my daughter could no longer hear our voices would never come. Even though we’ve been learning ASL, nothing prepares you for being told that your child is going from hard of hearing to completely deaf.
How does a parent accept and comfort their child when they receive a dire diagnosis, knowing full well that outside of a miracle, the inevitable will come?
“Call it wishful thinking or being foolishly optimistic, but I had hoped that the day when my daughter could no longer hear our voices would never come”
The only thing I could think of was, “We are fighters.” My family and I have a faith in One bigger than us and that regardless of the circumstances, we believe that this one episode in my daughter’s life is part of a bigger journey that we, not she alone, will endure. And I told her as much.
Still, seeing your child cry with heavy sobs, knowing as a father there’s nothing you can do, is beyond heartbreaking.
That night, I put her and her older sister to bed. A few minutes later, I heard some rustling from their room and went in to find my oldest daughter hugging the little one.
“What’s wrong?” I asked.
“She had a bad dream,” my eldest responded.
“I had a dream that you and mom were talking and I couldn’t hear you,” the youngest said. “I don’t want to go deaf. I want to hear.”
Thankfully, the light was off as bit my lip and tears started to fall. I hid my face in her long, black hair. I kissed her, knowing there is a limited amount of time before our voices go into the dark, not to return to her.
As I shut the bedroom door, I prayed, “Please, God, give us one more day. Don’t let our voices disappear.”
The next day, I went and bought tickets to the opera.
I can honestly say that my daughter has been a blessing to many people. We’ve had wonderful experiences and interacted with other individuals who we never would have had the pleasure of knowing if it hadn’t been for our circumstances. She has shown me what really matters in life and serves as a reminder to appreciate each day for what it is: a gift.
In some ways, I feel that my wife and I were chosen to be her parents. Knowing this does not make the road any easier to travel as we move forward, but I know that hope is there.
Since we don’t know if and when our daughter will go completely deaf, we’ve decided to expose her to as many different hearing experiences as possible. Recently, we’ve gone to a concert to hear four harpists play, we’ve attended two operas and we’ll see a third in the near future. We’ve gone to a children’s play to see a rendition of Shel Silverstein’s, “The Giving Tree.” We went to Santa Monica Pier and heard the waves of the ocean. This summer, we’re traveling to Alaska so she can see and hear the glaciers crack and calve into the water.
Just the other day, she asked us to enroll her in singing classes. When we asked what type of songs she’d like to sing, we should have anticipated her response.
You guessed it... opera.
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